Dear Addie,
Compassionate. A social worker used that word with me this week when discussing a plan of care for you and I almost melted into a puddle of relief.
Compassionate.
It’s so often when people ask me “how’s it going?” I don’t tell the truth, ok maybe like 5% of the time I do. I’m pretty guarded. It has nothing to do with them and their ever so sweet intentions, it’s just not an easy answer. Seriously how much time do you have!? I often find myself giving a surface response because honestly that’s a pretty loaded question and I not sure how many people would really want to sit and listen to the truth of how it’s really going...and I’m not sure I could even sum it up? Our truth is 24 hours a day moving so fast that we seem to be standing still and at just the snap of one’s fingers we can go from happy, to meltdown mode, to deliriously laughing asking for chicken - true story! It’s head spinning!
The past month has been tough. We’ve battled some of our biggest challenges to date and it felt like it all came at us without warning. Kind of a funny thing to say right?! As if we are some sort of robot malfunctioning, WARNING SELF-DESTRUCT MODE ENGAGED, not so much Ad. This is real life and we are real humans full of real emotions.
It’s inevitable that we ride these waves of being comfortable with a certain level of chaos and then a storm hits and everything changes. I know we’ve only been at this for a decade now, but I’ve come to realize there’s no magic pill, therapy, or diet that sails you back to calm waters. It’s a combination of things that includes a team of people who see you as a person with real feelings and an extraordinary amount of patience paddling through trial-and-error care. I’ve said it a thousand times, what works for one person with autism is just that, there is no one size fits all approach, but if we are keeping it real that goes for neurotypical people too! If someone said the new NIKE shoes they bought were so comfortable they ran an extra 3 miles in them, that might certainly intrigue me and I might put them on but only make it to our mailbox and back – all out of breath and not comfortable. Glad it worked for them! Now clearly, I’m talking about something a little deeper than shoes and your out of shape mother but you get my point - we are all different.
This week I had a telehealth call to discuss a plan of care to help you through these challenges we’ve been facing and I was asked to explain how it was going, how we were navigating these waters, but this time - I didn’t hold back, I let it all out. In full disclosure I had just watched a news segment on special needs individuals being shocked as a form of therapy. Their lifeless faces were branded in my thoughts. I could not for the life of me see this as an acceptable way to treat a human being, but it was happening. I was watching and thinking a thousand things but when in the world did we lose compassion and empathy for people? I think it goes without saying that we would NEVER allow such a thing to happen with you, but my heart ached to know it was out there.
I began to talk.
You know what Ad she listened and she heard every word I had to say, even the words I felt like I was tripping over trying to get my point across. At the end of our call as I was jotting down the last of my notes she said, “we will find the right, compassionate approach for you all, promise.” That word, compassionate, it was exactly what I wanted for your care. Compassionate, it just felt so human. A real person, with real feelings & and real challenges, not something that needed to be fixed which is often how autism can be perceived. You’re not broken Addie; you’re living with challenges.
Nothing changed with you from the start of that call to the end, but a glimmer of light shown on where we might be going next. What did change however was how I felt. There’s something to be said about talking to someone, like really talking. No holding back. I’m not saying every neighbor, family member, or friend needs to take on the role as an impromptu therapist, but we should normalize saying how we really feel to those that care to ask.
A compassionate approach. I like the sound of that.
We are all in this together sweet girl. Calmer waters are in our sight. Promise.
Love,
Mom
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